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Dex for Christmas

December 23, 2010

Lovely. Dex for Christmas

Last week we missed the spinal tap because the snow fell early that morning. Then, like a smart and with-it cancer mom, I got the pill case to give Isa her nightly pills. Hmm, I think to myself, there isn’t any methotrexate here.

“Honey, she gets 5 and half right?”

Honey answers me, “Yes dear.”

I traipse off to find the chemo backstock in the yellow plastic bag that is clearly marked CHEMO…. danger… etc.

Back in the kitchen I lovingly hand Isa some yellow poison.  Then not quite promptly enough, yell  SHIT!  followed by a couple of shit shit shits. Methotrexate is the same drug that is given during the spinal tap that we rescheduled to the following day.  The luke kids don’t take both in the same week. Only oral MTX when there isn’t a spinal tap.  Only Spinal MTX not oral MTX in the same week.

Unbelievably this is the first time that I have done this. Then I wonder, does this constitute an emergency?  Do I or do I not call the pediatric hematologist on-call?  More cussing. I call, apologize profusely for interrupting his life, and tell him that we had the spinal scheduled for the next day, and that I gave her the drugs and the office can’t be contacted before we have to leave.  (It is a two hour drive to the hospital. The clinic doesn’t have an evening answering machine when it is closed.)

He says, “It happens, and we will just postpone the lumbar puncture until next week. I will let the clinic know what happened.”

More thanking and apologizing.  Tuesday morning I called to reschedule the spinal tap again.

One week later, but different because we  now we have five folks traveling, we picked up Brother at the airport for his holiday trip so he now has to go with us.

The tap is routine at this point, but it also represents the possibility for relapse. Every time we do one of these things I think of CFS relapse. (This of course would suck.)  Also, I think of spinal cord damage. (Also sucky.) I think of morphine and versed and the reactions to those. (um sucky and sucky.)  I also take the opportunity to do a little subliminal programing.  If the mind is relaxed, I say, take advantage of it.  I tell her quietly in her ear that she will be relaxed, that she is a strong and capable girl, that she will quit fighting with her sister, that she will clean up her room.

The nurses sometimes chat about business or make small talk. This time the nurses talked about hair. One had been to the salon and received a Brazilian Blow-out. Seriously, that sounds like something my husband would like. Click the link and see the photo.  I laughed.

Don’t get me wrong I love, love, love a good conversation about hair, but it was just so random.

The incongruity of the comments, the seriousness of the procedure, but also the not serious  and only routine nature of the procedure, brother watching it for the first time and the nurses making him sit down to avoid hitting the ground if he passes out.  Sister in the next room with Papa picking the television channel.  The large family of Amish just leaving the recovery room. The  sort of crappy toys in the treasure chest…

Makes my head spin.

And now the dex…steroids again.  Every month I complain about this, and I am grateful that she isn’t experiencing some of the other side effects of the drugs.  There are lots that she could be having, but we just get a screamy, weepy, aggressive  five-year-old. The stress shows on our faces.  Two-years of cancer stress looks like this 

Isa handles herself well. Her port accessions go well. She rarely complains of pain or dizziness or anything. Sometimes she wants an extra nap.

Thanks for your continued prayers and energy. Thanks for reading.

DMM

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12 Comments leave one →
  1. January 31, 2011 10:36 pm

    I hope you don’t mind if I ask you a question. My son is in LTM and his ANC has been 2000+ for months. We are finally increasing the 6mp and his ANC is down to 1600. Now they want to increase the 6mp even more and I’m terrified he’ll crash right back to neutropenia land which means hospitals become our vacation home again! I saw your earlier post had Isa at 50mg of 6pm…has she been inceased or did she have any issues? We will be up to 75mg for 6 days out of the 14…I’m worried. Thansk for ‘listening’,
    Katy

    • February 9, 2011 4:29 pm

      Ok,… there are a lot of questions here. Just finding your post today. Have not been online much, and have two posts brewing to publish soon. It whacked her out by the way.

  2. Ana Rodriguez permalink
    January 20, 2011 8:02 pm

    I’m just wondering, does she go to school? I’m debating about enrolling my daughter in pre-kindergarten. On the one hand, I think it would be good for her development but on the other hand, I am so scared of all those germs circulating in class rooms. I am so torn. Hope all is well!

    • January 21, 2011 5:25 pm

      Ann, she isn’t old enough to go to regular kindergarten and I don’t really care if she adjusts to other children or not. I figure there is lots of time to learn how to be social. Most of that type of learning is parent directed anyway. I mean how can any other 4 or 5 year old teach my child, (your child) anything. They can only teach what they know which isn’t much. The germ situation is nasty. I am sorry, but the number one way respiratory diseases are transmitted is breathing in the virus, which then starts replicating. How many pre-k kids cover their coughs or sneezes. If you can, keep the kid home!!! I did and will for as long as I can.

      • Ana Rodriguez permalink
        January 21, 2011 10:58 pm

        Thank you, I agree with you, I’m gonna keep her home until it’s time for kindergarten. By then she’ll be done with her treatment and I’ll breath easier!!

  3. January 16, 2011 6:11 pm

    Your blog is wonderful and has helped me with my son, Sammy’s treatment of TCell ALL. My blog was started so could vent…I have heard it helps others. Thank you for helping me with yours. I hope Isa continues to do well and that you maintain the strength you have…and inspiration! Oh, and we have screwed up a few times…you handled it so well. I tend not to apologize so much to the doctors…perhaps I should.

  4. Susan permalink
    December 30, 2010 5:27 pm

    That last puncture sounds like something from a David Lynch movie. All you needed was a dancing dwarf in the corner! Keep hanging in. Love your posts. well, you know what I mean.

  5. Ana Rodriguez permalink
    December 24, 2010 12:46 pm

    My daughter gets the at home mtx in liquid form, so they only give us enough doses until the next appointment, but I had a screw up last month with her meds and I had that same panicked reaction (plus it was a sunday night). We’ll be on dex for New Years, the constant hunger and all the wild mood swings makes this my most hated drug that we have to give her.

    Hope everything goes well over the holidays, Merry Christmas and Happy New Year!!

    • December 29, 2010 5:56 pm

      Thanks for commenting. I am counting the months until it, the dex, disappears. Good-by steroids!

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